When I was first diagnosed in 2001, platelets were in the high 800'000’s and I’d had a shower of clots in both lungs. I was found to be JAK2 positive, and also to have Factor V Leiden, a genetic predisposition to clotting. I was put on warfarin, and told that had I not had the clotting factor, I would likely have hemorrhaged. 16 years later, I had a small hemorrhagic stroke, was taken off the blood thinners and put on a low dose daily aspirin as a nod to the clotting factor. I have been on Hydrea all but one year since 2001.

We all have an MPN, but our specifics are individual and so there is not a one size fits all. Our doctors can and should articulate for each of us their decision criteria and why our particular course of treatment.

Aspirin is like putting a band-aid on a deep wound; sooner or later, it's going to start bleeding out. I'm 73 and have PCV and have been on Hydrea for 10 months: 500mg per day and 1000mgs on Mondays and Thursdays. No problems, no issues, no worries. Platelets down to 350K. Your high platelet count, if it contiues to go up, will be an issue. You can do one of two things; get on a good medication that your doctor prescribes, or you can risk a stroke or throwing a blood clot into the lung when the platelets are so high you can no longer control them with aspirin. Your choice; your journey. Good luck to you.

Hi Vicki, I share your thoughts. At 61yrs old my treatment protocol, as Brian mentioned, was asprine and hydroxyurea. I declined taking this chemo option. I have PV and my numbers are controlled by phlebotomies.
I am now contemplating taking Besremi interferon due to concerns of progression and trending wbc.
Doctors primary objective is to minimize thrombosis. However, quality of life is not a consideration when being prescribed treatment. Secondly, cytoreduction is recommended to reduce or control symptoms.
Like you, I am asymptomatic and the thought of significant side effects from treatment is troubling.
Personally think our overall health, symptoms and allel fraction should be the primary considerations for treatment.
Have an open discussion, I did, I have the full support of my Hemotologist. The protecol did not apply me and I made the right choice.

I was diagnosed with ET, JAK2 at age 60. Stayed on low dose aspirin only until 63. Platelets creeped up to 600 and fatigue and leg/muscle pain was limiting getting through day and sleeping well . I started on hydroxyurea 500mg 4 days, 1000 mg 3days. Took a bit of time but platelets were at 350 last month and pain and fatigue are mostly gone . Doc reduced dose to 500 mg everyday. I have not noticed any side effects from the hydroxy .

Thank you for sharing your experiences. I see my doctor next week. Fingers crossed I can avoid it for the time being.